In this article, we speak to Robert Jones, Honorary Professor of Clinical Psychology at Bangor University, UK, and a retired Consultant Clinical Psychologist. Robert is co-author of the book The Art of Caring for People with Intellectual Disabilities: Enhancing Quality of Life Through Attitudes, Education and Behaviour. Robert talks about the book’s central messages, managing challenging behaviour and what makes caring an art form.
The book is about a journey where two psychologists, me and Jonathan, take the reader by the hand and walk through lots of examples where we have seen really excellent caring.
When you walk into a residential or day care establishment, you can spot the one or two carers who are absolutely perfect at what they do. For many years, I’ve been wondering, is it possible to quantify that?
You can recognise it, and people can agree that some carers have something special about them, but can you abstract what it is?
So the book talks about really, really good examples of care. Care that is so good it might be considered an art form. When any skill is shown at a very high level, it becomes art.
The book then identifies the particular elements of good care, and how the reader might increase their skills along the lines of some of the excellence that we’ve talked about.
We then give the readers tips and ideas based on up to date psychological knowledge about how they can increase their caring skills. This is the essence of the book.
In terms of central messages, I think there are two. The first is summarised in the last four words of the book: “We are our connections”. From very early on, I knew that I wanted to end the book with these four words to emphasise the central message that we live in a social world in which relationships are central.
The second message is summarised in this quote from chapter 10: “Turning caring into an art involves developing nurturing relationships that transcend labels, diagnoses and categories, and which celebrate our common humanity.” Perhaps the most important message of the book is that good things happen if we can keep our focus on the shared common humanity between us as carers and the people we care for.
Well, the phrase “the whole is more than the sum of its parts” comes in, and when you try and compartmentalise it down to individual bits, the increase in skill in those individual areas is part of the solution. But the art form comes in the very subtle ways those skills are all used at the same time – the way they come together.
Rather than increasing a single skill like “I’ll just get better at listening”, it’s a combination of multiple skills which are put together. We use the metaphor of a liquid, sometimes it flows in a way that belies the ability to compartmentalise it into separate chunks.
Essentially, it’s about the person’s value system. Sometimes, there’s a ‘them and us’ ideology, and the art of caring involves getting past that, and talking about what we have in common. Our common humanity, our common needs, wishes and aspirations. Those people who make really good carers seem to be able to put themselves in the position of the person who is being cared for.
For example, it’s easy to forget that if I ever have a conversation with somebody who has an intellectual disability, they are always in the power down position. So, we’ve got exercises in the book which ask the reader to imagine what it’s like to have no say over where you’re going to live and who is going to live with you. You could be transferred to another area of the country at a moment’s notice, without your permission. You could have people share your room who you don’t like, or have staff members working with you who you don’t like. It’s very easy to forget the cumulative effect, over a number of years, that such lack of power over your own life might have on somebody.
We have a chapter in the book on challenging behaviour. We go through behavioural approaches such as functional analysis to try and help and treat challenging behaviour but we emphasise the contribution of attachment and trauma that also may be present.
We ask the reader to take an example of challenging behaviour that they have seen in their workplace, and then imagine themselves engaging in that behaviour. We ask them to think about what might have led them to perform that behaviour. Usually it’s not a one-off event which has caused the behaviour, it’s when the person has constantly been unable to have their needs met.
If no one is listening to you, you can’t make your wishes known, and you’re chronically lonely, eventually, you might start throwing things around the place. This is no different for people who have an intellectual disability and for those who do not.
But carers are not trained to realise this, they’re trained in compliance. It’s a carers job to stop the individual from engaging in aggressive or ‘attention seeking’ behaviour. But in the book, we say that people with intellectual disabilities may have been starved of attention for most of their lives, and maybe it’s perfectly legitimate for them to want more attention than the rest of us, as we have all kinds of other ways of getting it.
If you start thinking in this way, it can change the way you interact with people. It’s common humanity. You and I and ‘them’ are all the same. If you can get your head into how it feels to be cared for, you can be a better carer.
People with mental health problems often think “I’ll get on and live my life when I stop being anxious or depressed”. ACT says, don’t wait until that happens, get on and live your life and do the things that you want to do today or tomorrow, even if you’re still feeling depressed or anxious. The target is not to reduce your anxiety or depression but to live a fuller and more meaningful life, and this might cause you to feel less anxious or depressed, but this is not a target of the intervention: rather it’s a side effect of living a happier and more meaningful life in line with your core values.
The principles of ACT underpin the entire book. It is a philosophy as much as it is a therapy and is basically about living a full and meaningful life, and this can be done through an exploration of values.
So, we ask the reader to explore their values are and what they think is important. In proper ACT therapy, many weeks are spent exploring with people what their real values are, and then the goal is to live life in congruence with those values. Similarly we ask people to explore the values they wish to bring to their roles as carers.
This can have advantages for carers and for people with intellectual disabilities. We give a real example in the book of a carer who realises that under their own value system, they want to treat people with intellectual disabilities with the compassion and warmth they deserve because of who they are, not because of who they might be. Instead of just congratulating someone and showing them affection if they do something which impresses them, carers should give them all the warmth and affection for who they are irrespective of what they might achieve.
It is only that in-depth analysis of value systems that makes this kind of realisation possible, and this is why we decided to use the principles of ACT to underpin the book.
I think the book does have relevance for unpaid family carers, but we were cautious about claiming that. Interestingly, however, someone who recently reviewed the book pointed out that many of the points made are relevant for those caring with people with dementia and/or brain injury.
One woman who manages a service for people with acute mental illness said the book is directly applicable to her service. So, in that sense, I feel more comfortable saying that you could generalise the principles of the book beyond those who care for people with intellectual disability to carers more widely. That being said, family carers have different needs, so while some of the book could be relevant, not all of it will be.
There’s no simple answer to this question, and past attempts to find a single cause have often ignored the complex interplay of factors that are often at play in such situations. A crucial factor that is sometimes overlooked, however, is the quality of support and supervision that is available to carers in the organisations that are involved in these facilities.
Frontline carers are typically the first targets for blame for a system that itself is unsupportive of carers and does not offer them sufficient training or support them to develop a value system or examine their own attitudes toward people. If carers are not shown what best practice is, they will not engage in it.
We have a chapter on leadership, and this is because many people in the industry are quickly thrown into junior leadership positions because of high staff turnover. Someone who has been a carer for less than a year may become a senior care worker and become responsible for everyone on shift, without having any formal leadership training. In particular, robust supervision systems have often not been instigated and, even when some system is in place, it often tends to focus primarily on project or target management.
This means proactive supervision often doesn’t happen. Very regular supervision is vital for any staff member working with people with intellectual disabilities. This should be at least weekly for those working with people with challenging behaviour. Carers should be asked how their work is making them feel. Do they find themselves getting angry or bored? They should be asked why they think a person is displaying challenging behaviour and look for the explanations behind it, and how this could be prevented. Supervision should centre on management demonstrating how they care for frontline staff and, in turn, support them to care for people with intellectual disabilities.
So, supervision of people who are in highly responsible positions, often very young, with very little training is vitally important. These staff often take the rap for a system that hasn’t looked after their employees well enough. There is always going to be some bad apples, but to say the problem with the system is that people who apply for jobs as carers are bad eggs is a gross oversimplification.
The only way to look after the needs of people with intellectual disability is to look after the needs of the people who care for them. People need to be taught how to care and to bring out the best in themselves and those they care for.
To buy The Art of Caring for People with Intellectual Disabilities, click here.
